Coping with kidney disease – qualitative findings from the Empowering Patients on Choices for Renal Replacement Therapy (EPOCH-RRT) study

BACKGROUND: The highly burdensome effects of kidney failure and its management impose many life-altering changes on patients. Better understanding of successful coping strategies will inform patients and help health care providers support patients’ needs as they navigate these changes together. METHODS: A qualitative, cross-sectional study involving semi-structured telephone interviews including open- and closed-ended questions, with 179 U.S. patients with advanced chronic kidney disease (CKD), either not yet on dialysis ([CKD-ND], n = 65), or on dialysis (hemodialysis [HD], n = 76; or peritoneal dialysis [PD], n = 38) recruited through social media and in-person contacts from June to December 2013. Themes identified through content analysis of interview transcripts were classified based on the Coping Strategies Index (CSI) and compared across groups by demographics, treatment modality, and health status. RESULTS: Overall, more engagement than disengagement strategies were observed. “Take care of myself and follow doctors’ orders,” “accept it,” and “rely on family and friends” were the common coping themes. Participants often used multiple coping strategies. Various factors such as treatment modality, time since diagnosis, presence of other chronic comorbidities, and self-perceived limitations contributed to types of coping strategies used by CKD patients. CONCLUSIONS: The simultaneous use of coping strategies that span different categories within each of the CSI subscales by CKD patients reflects the complex and reactive response to the variable demands of the disease and its treatment options on their lives. Learning from the lived experience of others could empower patients to more frequently use positive coping strategies depending on their personal context as well as the stage of the disease and associated stressors. Moreover, this understanding can improve the support provided by health care systems and providers to patients to better deal with the many challenges they face in living with kidney disease.